^^^^^^GREETINGS FROM^^^^^^^^^^ Ivan Suzman 47/10 [log in to unmask] Portland, Maine land of lighthouses 55 deg. F warm wind *********************************************************** On Thu, 11 Sep 1997 00:17:46 -0400 SJS-OnTheNet <[log in to unmask]> writes: >Dear Ivan -- > >Sorry that this problem with NPF is getting to you so hard..... >However, if you want to pursue it, my suggestion again is: consult a >good >lawyer and see if you do still have a fightable case. Dear SJS and listfriends, THank you for continuing to connect to me. I can't thank you all enough for trying to help me "get over" the HORRIBLE and expensive experience I had to endure at the National Parkinson's Foundation in Miami, Florida. What I feel sad and unresolved about is that we are 1600 good, caring people. We try out our ideas among each other. We weigh the pros and the cons , and we listen to each other. Yet, when any one of us is treated UNFAIRLY, the question arises: How powerful are we, not only as loving advisors, but as a political community?? It is apparent to me that ALL seven listpeople agree that I may fight the NPF if I can, but I MUST try to accept what happened and let go of my anger. ALL of us, so BUSY fighting Parkinson's , really have no "PWP's advocate" out there to go to the NPF, and say, "One of our members has been wronged. We ALL expect the NPF to address this situation NOW, so that justice is done for ALL of us." So we lose our power! It's almost like fighting for the Udall Bill. We struggle and struggle and there's STILL no Udall LAW on the books. What I mean is that we have no "Community Representative" to help us when we are truly aggrieved. OUR POLITICAL POWER IS INSUFFICIENT. Then the work falls back on us INDIVIDUALLY! Honestly, I am too exhausted from 10 years of Young Onset Parkinson's to spend those rare "good hours" being David fighting Goliath. So, whether it's the NPF, Newt GIngrich, or the FDA, I am going to SCREAM LOUDLY with my now-softening Parkinsonian vocal cords. But at some point, your inner voice says: "We as a 1600-member community are not ORGANIZED nor CONNECTED adequately to help listmembers confront "the system". I just wish there was SOMEONE IN MIAMI--a lawyer that one of us knows--who would go to bat for me(and really, for all of US)--rather than my having to search on my own, like I was on a needle-in-a-haystack hunt for someone to represent not just me, but again, ALL OF US. Someone like Mr. Muhammad Ali comes to mind -- one of my greatest heroes - especially because of both his spirit of resistance, and his great capacity to love. What an incredible role model!! I guess, my answer to all of you who are trying to empathize and help me , is that the NPF should get phone calls in Miami and telegrams and letters and should not receive dollars, and it should be challenged-IN AN IDEAL WORLD-by people who have the strength to do so. I can't and won't ask ANY of you to actually do that--you've all got ENOUGH headaches without this, too. Thank you all for your prayers, suggestions, and thoughts. I wish we were more of a COMMUNITY. Our "cybercommunity" is at least far, far better than nothing at all. I am going into prayer over this tragedy. God is testing me. Please call if you feel like talking to me directly. Ivan Suzman (47/10) (207) 797 - 8488 9 Range Street Portland, Maine 04103 [log in to unmask] The National Parkinson's Foundation, Inc. is (305) 547 - 6666 .